Freedom for dialysis patients

Kathe Lebeau

On Tuesday, I'm lucky to be speaking at Home Dialyzors United's third-annual meet up and conference in Baltimore. As an end stage renal disease patient currently doing home hemodialysis treatment, this is an issue I am passionate about. And, mostly because I'm an actual home dialysis patient, I'm able to attend the conference — since my dialysis travels with me — to speak firsthand about the benefits of home dialysis and help spread the word. It's an important conversation that I don't think happens nearly enough.

My life changed about eight years ago, when I went in for gallbladder surgery only to discover that my kidneys had already lost 50 percent of their function due to an undiagnosed condition — primary hyperparathyroidism — and that I would eventually need to be on dialysis. Three years later — an important three years because I had the chance to learn a lot and talk with fellow patients — I began home hemodialysis treatment, and I continue it at home today while I wait for a kidney transplant.

Dialysis is certainly challenging; it can be also be exhausting, debilitating, frustrating, time consuming, and so much more. But there is a better way of dialysis, and it doesn't have to be so hard. Being someone with end stage kidney disease and on dialysis doesn't mean your life is over, but your life is going to significantly change. The good news is that with the technology available to run treatments at home, you can have a better quality of life, doing shorter, more frequent treatments at home or even on the go, that more closely mimic typical 24/7 kidney function.

Home hemodialysis for me and others like me allows a freedom and flexibility that in-center treatment simply does not. It means that I get to do most all the things that are important to me, work, and spend time with my friends and family. It also means I am able to travel here to Baltimore to talk about my experience — something I didn't think would ever be possible before I started home hemodialysis.

It makes sense that 90 percent of nephrologists say they would choose a home dialysis therapy for themselves or suggest it to their loved ones if they were told they needed renal replacement therapy, with home hemodialysis being the preferred modality choice. Yet this treatment option is surprisingly underused. More than 90 percent of patients on dialysis in the United States are doing treatment three-times-a-week in a center, largely because of unintended barriers that currently prevent more dialysis patients from taking advantage of this life-changing treatment option.

I believe this can — and should — change.

Today, more than 570,000 Americans are living with end-stage renal disease, most of whom are dependent on dialysis treatments to replace their kidney function. For many patients, home hemodialysis is a treatment option that could work well and should be available to them.

For this to happen, patients need better education on the types of therapies available to them and more support among nephrologists and dialysis providers offering home hemodialysis training. In addition, further improvements in Medicare reimbursement can help support greater awareness and availability of home hemodialysis, and other home therapies. The difference that makes in my living a full life on dialysis is amazing, and so many others can and should be able to experience that.

Right now, here in Baltimore, the Centers for Medicare & Medicaid Services (CMS) is reviewing its proposed rule for changes to the End-Stage Renal Disease Prospective Payment System for 2013. CMS has been asked by the renal community to correct the current payment structure that is not sufficient to foster more home hemodialysis training in order to make this life-changing modality more accessible to Medicare patients with end-stage renal disease. I encourage CMS to do what they need to do — what is in the best interest of patients — to make sure all patients who can benefit have access to dialysis at home.

At the Home Dialyzors United conference, countless personal stories will be shared about the lives that have been changed by home dialysis. I hope CMS will be listening to the all important patient perspectives and will take the necessary steps to make sure every patient that can benefit from home treatment has access to it.

Kathe LeBeau is an active kidney patient advocate and director of patient services and public policy for the Northeast Kidney Foundation. She lives in Latham, N.Y. Her email is Kathelebeau@gmail.com.